Friday, November 25, 2011

A Thankful Update

I suppose it it a good thing that we haven't updated this in awhile, it means we have been busy with life, and that is a very good thing. A lot has happened since our last update, which is why we haven't written! Lizzy went back to school at her old school, and then, when that didn't work out so well, we moved her to the Middle School in town.  She has just flourished since changing schools. Immediately after the switch, it was like she became herself again. She was stressed at her old school and her new school has been fabulous in making it a great environment for her. She has a reduced schedule and is done by 1pm everyday so we have time for all her daily therapy (which I will get to in a minute) She has a great group of new friends there who are a lot of fun and very helpful and kind. A wonderful girl named Sidney has been assigned to be Lizzy's buddy. She waits for Lizzy every day in the office and then they take the elevator up to the 6th grade floor. At first she walked her to all her classes, helped her at lunch, and introduced Lizzy to all her friends.  We are very grateful to Sidney for her kindness, thoughtfulness, and friendship!
The teachers have been so wonderful to work with too, helping her and adjusting assignements to fit her needs. She is doing very well too! Her grades are back to what she was doing before the stroke and her testing shows that she is at, or above, grade level in all academic subjects. In fact, her special eduation teacher told us that having Lizzy in class, was like having another teacher there as Lizzy would assist the other students too.
Lizzy does sometimes need a little help with some things, and she does get tired even with her reduced day, but overall we couldn't be more pleased. Lizzy "graduated" from the Speech and Physical therapy she was receiving outside of school at the end of October as well! In September and October we had therapy visits after school usually four days a week, we have enjoyed having a little more time after school in November. She still has some progress to make in both areas and still wears her leg brace when she is out and about. We are still doing some PT at home and thanks to a wonderful friend, Megan, Lizzy is doing pool therapy on occassion too.
As for her arm, we finally got insurance approval for the saebo device used to help arm movement. It is a spring loaded device that fits around her fingers and cups her arm and hand and helps to break down the tone in her hand and strengthens the muscles in her hand, arm, and shoulder and assists with improving the nerological pathways between her brain and arm too. It is a lot of work, as she has to do around two hours of work daily just on her arm, and she doesn't always like it, but we are seeing great progress. Her shoulder looks so much better and is more even with the rest of her body an she can bend her elbow and even pick up things like sandwiches and bring them to her mouth. The actions aren't exactly graceful yet, but things are getting more controlled every day. It is a blessing to see!
Her mom or dad have to help her with her daily excercises too, so she is getting a lot of quality time with them. We read to her as we count her ball lifts and we have been through quite a number of books already.  Lizzy is also earning "points" for all the excercises she does and after earning 150 of them, she gets to pick a reward. She has been to her favorite restaurant in town twice already and is thinking of earning a night at the movies next. It is still hard, and it takes her about a month to earn a reward, but it gives her something to work toward.  We will be finishing up our last OT visit next month and then we we be completely on a home program for her arm.
This last week we had another appointment with Lizzy's nuerologist.  Some of her recent tests have been a little confusing.  They show some irregularities in the blood flow in Lizzy's brain, and it's unclear if that is simply on account of the stroke or if it is showing that more trouble might be coming.  He did say that another stroke was a definite possibility.  When and where we don't know.  On the bright side, he did believe that another stroke would be recoverable for her.  Still, he would like to have a better look than ultrasounds and MRI's can give him.  So, next summer we will travel to Houston to have another angiogram, but this time they will take the camera right up into Lizzy's brain to get up close and personal pictures of what is going on.  It's a bit sobering, but not completely unexpected.  Also, it was interesting to see Lizzy during the appointment.  Apparently, she has been doing a ton of research on FMD and had a bunch of questions for the doctor.  It turns out that she knows more about FMD than both parents put together.  We learned (Lizzy already knew) that there are 5 types of FMD, and Lizzy has the rarest form (only 16 known cases in the whole world-- adult and kids put together).  Not only was Lizzy's research a surprise to Mom and Dad (we thought she was watching movies on her iPad), but also it seemed to have Lizzy prepared for everything the doctor said.  She has her down moments, but overall she is optimistic and upbeat about things.  She just takes them in stride, which is amazing for anyone, let alone a girl of 12. 
Overall, we are just so grateful and thrilled with Lizzy's progress. She really is a walking, talking miracle! As we sat around the Thanksgiving table and remembered just how blessed we are to have her with us, our hearts were very full. Once again, many thanks for your prayers on her and our befalf. Miracles do happen! We are looking forward to a wonderful few months ahead, with even more progress as Lizzy recovers.

What Lizzy has learned since her stroke

Lizzy was asked to give a talk in Sacrament Meeting last week. This is her talk, just as she wrote it.

As you know, I turned twelve last month. As litle as I wanted to, my Dad assigned me a talk. When he was released from the Branch Presidency, I though I got out of it, but the order still stood.  I was assigned to give a talk on having faith through trials. As you all know, I had a stroke in March and these are some of the things I've learned the last few months.

First, I've learned to have confidence in myself. When I look back at how I was in March and how I am now, it really surprises me at how far I've recovered. Before I was laying down in a bed and I couldn't even roll over. Now, I can't do cartwheels, but I couldn't do them before the stroke, so it really doesn't even matter. I learned to have self confidence because of how much I recovered. If I recovered that much, I can still do a little bit more, whether by my physical therapist's order, or mine.

Second, trials brought me closer to Heavenly Father and Jesus Christ. I remember laying in the ambulence and thinking, "I can just make it through." Heavenly Father and Jesus Christ helped me make it through and are still  helping me. Whenever it gets tough, I pray for faith and the strength to keep going.

And the final thing I learned is to never take life for granted. When you've come this close to death, you'll understand. Before I was just your average kid, now I relize that I'm special.

I want to close this talk with my testimony that I know this church is true and that Heavenluy Father has helped me through all the many wonderful and terrible times in my life. In the name of Jesus Christ, amen.